Örebro University
School of Medicine
Degree project, 30 ECTS
May 23, 2018
Author: Rebecca Jansson, Bachelor of Medicine
Supervisor: Sanna Aila Gustafsson, PhD
ERIKSBERGSGÅRDEN’S EATING DISORDER TREATMENT UNIT:
PATIENT CHARACTERISTICS AND TREATMENT OUTCOME
______________________________________________________________________________________________
VERSION 2
ABSTRACT
Introduction: Eating disorders are serious psychiatric disorders that often require specialized
care. Associated psychiatric comorbidity is frequent, with the most common comorbid
conditions being anxiety and mood disorders. Eriksbergsgården in Örebro is one of Sweden’s
specialized eating disorder treatment units.
Aim: Primary aims were to describe clinical characteristics of the adult patient group at
Eriksbergsgården and to evaluate treatment outcome and patient satisfaction at the one-year
follow-up. An additional aim was to examine if factors such as psychiatric comorbidity
affected treatment outcome.
Methods: This study used data from Riksät and Stepwise, two large-scale Swedish registers
for eating disorder treatment. Data for this study was registered into Stepwise and Riksät at
Eriksbergsgården between August 2010 and December 2017 and 489 adult patients of both
genders constituted the study group. Patient characteristics and DSM-IV axis I psychiatric
comorbidity were assessed at the initial evaluation. At the one-year follow-up, treatment
outcome and patient satisfaction were evaluated.
Results: The most common diagnoses in this patient material were eating disorder not
otherwise specified, 56.6 %, followed by bulimia nervosa, 26.4 %. At the initial evaluation,
62.0 % of the patients suffered from psychiatric comorbidity. Of the patients with initial
comorbidity, 43.3 % were recovered at the one-year follow-up, compared to 62.8 % of the
patients with no initial comorbidity, p=0.021.
Conclusion: Our results confirm the previously known fact that psychiatric comorbidity
among eating disorder patients is common. Also, the results identify psychiatric comorbidity
as a possible factor to have negative effect on the treatment outcome.
Keywords: Eating disorder, psychiatric comorbidity, anorexia, bulimia, binge eating disorder,
EDNOS, Riksät, Stepwise, TSS-2
ABBREVIATIONS
AN Anorexia nervosa
BED Binge eating disorder
BMI Body mass index
BN Bulimia nervosa
CBT Cognitive behavioral therapy
CS Clinical significance
CS/RCI Clinical significance/Reliable change index
ED Eating disorder
EDE-Q Eating Disorder Examination Questionnaire
EDNOS Eating disorder not otherwise specified
GAD Generalized anxiety disorder
IPT Interpersonal psychotherapy
NOS Not otherwise specified
OCD Obsessive compulsive disorder
PSR Psychiatric Status Rating scale
PTSD Post-traumatic stress disorder
RCI Reliable change index
TSS-2 Treatment Satisfaction Scale 2
Introduction ................................................................................................................................ 1
Aim ......................................................................................................................................... 2
Methods ...................................................................................................................................... 3
Participants ............................................................................................................................. 3
Measures ................................................................................................................................. 3
Structured Eating Disorder Interview (SEDI) .................................................................... 4
Structured Clinical Interview for DSM-IV axis I diagnoses (SCID-I) .............................. 4
Eating Disorder Examination Questionnaire (EDE-Q) ...................................................... 4
Psychiatric Status Rating Scale (PSR) ............................................................................... 4
Treatment Satisfaction Scale 2 (TSS-2) ............................................................................. 4
Statistical methods .................................................................................................................. 4
Ethical considerations ............................................................................................................ 5
Results ........................................................................................................................................ 5
Discussion ................................................................................................................................ 11
Limitations ........................................................................................................................... 13
Conclusions .............................................................................................................................. 13
References ................................................................................................................................ 15
Appendix 1 ............................................................................................................................... 20
DSM-IV eating disorders ..................................................................................................... 20
DSM-5 eating and feeding disorders .................................................................................... 20
Populärvetenskaplig sammanfattning ................................ Fel! Bokmärket är inte definierat.
Cover letter ......................................................................... Fel! Bokmärket är inte definierat.
Ethical consideration .......................................................... Fel! Bokmärket är inte definierat.
1
INTRODUCTION
Eating disorders (ED) are serious psychiatric disorders that cause significant suffering for
affected individuals [1]. They have a life-time prevalence of 1-3 % and most commonly affect
young women [2–4]. ED in general and anorexia nervosa in particular are associated with a
high risk of premature death [5,6].
The classification of ED recently underwent revision with the implementation of DSM-5 [7].
The previous diagnostic manual, DSM-IV, classified ED into three categories: anorexia
nervosa (AN), bulimia nervosa (BN) and eating disorder not otherwise specified (EDNOS)
[8]. Binge eating disorder (BED) was included as a subcategory to EDNOS [8]. A problem
with diagnosing ED based on DSM-IV criteria was that, according to studies, more than 50 %
of the patient ended up getting an EDNOS diagnosis [9,10] and therefore less validated
treatment options [11]. An important aim of the DSM-5 classification was to provide more
specific diagnoses for patients with ED [12]. In order to make this possible, the major changes
in DSM-5 compared to DSM-IV were to make the diagnostic criteria for AN and BN more
inclusive, to acknowledge BED as a formal diagnosis and to include pica, rumination and
avoidant/restrictive food intake disorder among feeding and eating disorders [7]. In DSM-IV,
the three latter were listed among “disorders usually first diagnosed in infancy, childhood, or
adolescence” [8]. The ED listed in DSM-IV and DSM-5 can be found in appendix 1. Studies
have shown that diagnosing ED based on DSM-5 criteria leads to more patients getting a
specific diagnosis when compared to the use of DSM-IV [13]. In Sweden, the transition to
DSM-5 is ongoing but it is not yet incorporated.
Comorbidity between ED and other psychiatric disorders are common with numbers ranging
between 40 and 95 % [6,9,14,15]. Reasons for the wide variety in prevalence estimates found
in different studies might be, for example, different diagnostic methods or differences in study
populations (e.g. inpatients/outpatients) [9]. Anxiety and mood disorders are the most
common comorbid diagnoses [9,14,15]. Generalized anxiety disorder (GAD), social phobia,
specific phobia, post-traumatic stress disorder (PTSD) and obsessive compulsive disorder
(OCD) constitute the most commonly co-diagnosed anxiety disorders [9,14,15]. Among mood
disorders, major depressive disorder is the most frequent comorbid diagnosis [9,14].
Psychiatric comorbidity is thought to have a negative effect on the course of the ED and is
important to take into consideration when tailoring an individualized treatment for the patient
[6,16,17].
2
ED patients constitute a heterogeneous group, where multiple factors, such as severity of
disease, comorbidity, and motivation to participate in therapy may influence the treatment
outcome [18]. The focuses of the initial treatment are to stop starvation, gradually restore
normal weight in underweight cases and incorporate balanced and regular eating habits [19].
When eating habits begin to stabilize, psychotherapy is recommended to obtain long lasting
results [16]. For adult AN patients, no course of psychotherapy have yet been proven superior
to another [20] but therapies commonly used are cognitive behavioral therapy (CBT) and
interpersonal psychotherapy (IPT). For BN, three treatment options are supported by current
evidence: CBT, IPT and pharmacological treatment with SSRI [21–23]. For EDNOS, despite
being the most common ED diagnosis in outpatient care [10,24], the scientific evidence for
treatment is sparse with one exception, BED, where IPT and CBT have been proven efficient
[25,26].
Sweden has two large-scale internet-based data collections for specialized ED care, Riksät
and Stepwise, in use since 1999 and 2005, respectively [27,28]. Stepwise is a structured,
internet-based tool for patient assessment and data collection, and a part of the initial patient
evaluation as well as the patient follow-up in Swedish eating disorder units [29]. Initial
evaluation in Stepwise also includes registration in Riksät, a national quality register for ED
treatment with the aims to monitor ED healthcare, treatment methods and results as well as
patient satisfaction [27].
Eriksbergsgården in Örebro, Sweden is one of the units using Stepwise and Riksät. It is a
specialized, multidisciplinary ED treatment unit offering treatment to patients of all ages that
meets the criteria for an ED diagnosis based on DSM-IV. Patient contact can be initiated
either by medical or self-referral and approximately one hundred patients initiate treatment at
the unit each year. [19]
AIM
The primary aims of this study were to describe clinical characteristics of the adult patient
group entering treatment at Eriksbergsgården between 2010 and 2017 and to evaluate
treatment outcome as well as patient satisfaction at one-year follow-up. An additional aim
was to examine if baseline characteristics, such as psychiatric comorbidity, symptom severity
according to the Psychiatric Status Rating scale (PSR) and type of ED diagnosis, affected
treatment outcome.
3
METHODS
In this register study, data was extracted from Riksät and Stepwise. Inclusion criteria for the
registers are medical or self-referral to one of the participating treatment units, a diagnosed
DSM-IV ED and an intention to treat the patient at the unit in question.
PARTICIPANTS
Data for this study was registered into
Stepwise and Riksät at
Eriksbergsgården, Örebro between
August 2010 and December 2017.
Figure 1 shows the exclusion process
as flowchart. We intended to include
all patients, 18 years or older, that
received an ED diagnosis and initiated
treatment at Eriksbergsgården during
the study period. However, for various
reasons (e.g. severe psychiatric
comorbidity making completion of the
thorough questionnaires included in
Stepwise too challenging for the
patient) some cases don’t get
registered into Stepwise and Riksät and are therefore not part of this study. During the study
period, 734 new registries were made. Patients under the age of 18 and patients not diagnosed
with an ED at the initial evaluation were excluded from this study. 6 patients had initiated
treatment at the unit twice and in those cases, the treatment periods followed by a registered
one-year follow-up were included. One of these patients lacked a one-year follow-up, in this
sole case the first registration for the patient was used. Registered one-year follow-ups were
available for 107 patients. An additional 4 patients had, instead of a one-year follow-up, an
end of treatment follow-up made within ten to fourteen months from their initial registration.
Because of the proximity in time, these follow-ups were included in this study.
MEASURES
4
All instruments for measures described in the following sections are parts of the Stepwise
patient evaluation.
Structured Eating Disorder Interview (SEDI)
A semi-structured interview based on DSM-IV, used to assess ED symptoms [30]. In this
study the patients were classified into four summarizing diagnose groups: AN, BN, EDNOS
and BED. BED was separated from EDNOS in this study to evaluate the prevalence before
transition to DSM-5, where it is acknowledged as a separate diagnosis [7].
Structured Clinical Interview for DSM-IV axis I diagnoses (SCID-I)
A semi-structured interview to assess psychiatric comorbidities. It consists of two parts, part
one contains questions about demography, past and present illness, as well as treatment
history, while part two aims to establish if DSM-IV axis I diagnostic criteria are met, both
during the past month and lifetime. [31]
Eating Disorder Examination Questionnaire (EDE-Q)
A thirty-six-item questionnaire developed to assess ED thought processes and behaviors
during the last 28 days. The test consists of four subscales measuring restraint, eating concern,
shape concern and weight concern. A total score (EDE-Q total) is also calculated by dividing
the means of the subscales by four. [32] When EDE-Q is mentioned in this study, it refers to
EDE-Q total.
Psychiatric Status Rating Scale (PSR)
A scale used to rate the ED symptom severity from one (patient is in complete remission) to
six (severe ED symptoms) [33]. A PSR rating higher than four were in this study considered
severe disease.
Treatment Satisfaction Scale 2 (TSS-2)
A 6-item questionnaire assessing patient satisfaction with the ED treatment unit, staff and
treatment. Each question has four answer choices ranged from 0 up to 3, with 0 being the
lowest and 3 the highest level of satisfaction [34].
STATISTICAL METHODS
For statistical analyses in this study IBM SPSS version 24 was used. A p-value of < 0.05 was
considered statistical significant. Comparisons between patient groups were carried out using
Student’s t-test, Pearson’s chi-square test and Fisher’s exact test. The proportion of clinically
improved patients were analyzed with CS/RCI for the EDE-Q. CS, clinical significance,
5
investigates whether the patient’s post-treatment measurement falls within the normal range
for a population or not, i.e. if it passes the CS cut-off point for the test. In this study, CS cut-
off values derived from a large Swedish study were used [35]. RCI, reliable change index,
evaluates if the test score (in this study the EDE-Q test score) statistically significantly differs
between the pre-treatment and the post-treatment measurements. This index is obtained by
subtracting the post-score from the pre-score and dividing the result with the standard error of
the differences. An RCI of ≥ ± 1.96 is a statistically reliable change at the p < 0.05 level.
After calculating CS and RCI, four outcome categories were formed, modified from [35]: 1.
Recovered (RCI ≥ 1.96 and under cut-off score for CS), 2. Improved (RCI ≥ 1.96 but over
cut-off score for CS), 3. No change (RCI ≤ 1.96 and ≥ -1.96 independent of CS), 4.
Deteriorated (RCI ≤ -1.96 independent of CS) [35,36].
ETHICAL CONSIDERATIONS
Upon registration in Stepwise and Riksät, informed consent is obtained from each patient to
have their data stored in the registers and for it to be used for research purposes. All data is
part of current initial evaluation and follow-up routines and no data was collected exclusively
for this study. All patients were anonymous for me as I was given SPSS-files with de-
identified data.
RESULTS
A total of 489 patients were included in this study. Table 1 shows demographic and clinical
characteristics of the patient group as a whole, as well as subdivided into ED diagnoses.
Ninety-six percent of the patients in this material were females and the mean age at initial
evaluation was 26.5 years. The most frequent diagnosis in this patient material was EDNOS,
56.6 %, followed by BN, 26.4 %, AN 12.1 % and BED 4.9%.
6
Table 1. Baseline characteristics for the patients included in the study, as a total and
subdivided into eating disorder diagnoses. The table shows number of patients (%) and
means (standard deviations).
Almost two thirds of the patients, 62.0 %, had, in addition to the ED, at least one other DSM-
IV axis I diagnosis at the initial evaluation, shown in table 2. The highest prevalence, 66.7 %,
was found among the BN patients and the lowest, 54.2 %, among the AN patients. Anxiety
disorders affected 45.0 % of the patients and were the most common comorbid diagnose
group. The most frequent diagnoses among anxiety disorders were specific phobia and GAD.
Mood disorders were found in 34.4 % of the patients, with major depression being the most
common diagnosis. No statistically significant differences in the comorbidity distribution
between the ED diagnose groups were found.
7
Table 2. Axis I psychiatric comorbidity at the initial patient evaluation.
Out of the 489 patients included in this study, 111 (22.7 %) had a registered one-year follow-
up. A non-response analysis, shown in table 3, was conducted to evaluate if the patients with
and without a follow-up differed at the initial patient evaluation. A higher proportion of the
patients without a follow-up suffered from psychiatric comorbidity, 63.5 % compared to 56.8
% among the patients with a follow-up. Also, suicidal ideation was over three times more
8
frequent among the patients without a follow-up, 25.4 % compared to 8.1 % among those
with a follow-up. The differences between the groups were not statistically significant.
Table 3. Non-response analysis comparing baseline measurements between the patients with
and without a one-year follow-up.
Out of the 111 followed-up patients, 107 had been assessed for ED diagnoses at the one-year
point. Figure 2 illustrates the diagnostic flux between the initial evaluation and the follow-up
for these patients. At the follow up, 52 patients (48.6 %) no longer met the criteria for an ED
diagnosis. This proportion was the lowest for patients initially diagnosed with AN (26.7 %)
and the highest for patients initially diagnosed with BED (80.0 %). Regarding diagnose
stability between the initial evaluation and the follow-up, no diagnostic flux occurred between
the AN, BN and BED patient groups but 14 patients initially diagnosed with AN, BN or BED
received an EDNOS diagnose at the follow-up.
9
Figure 2. Illustration of the diagnostic changes between the initial evaluation, shown on the
left side, and the one-year follow-up, shown on the right side. The line thickness represents
the size of the patient flux. (AN = anorexia nervosa, BN = bulimia nervosa, EDNOS = eating
disorder not otherwise specified, BED = binge eating disorder)
At the one-year follow up, 100 patients had filled out the scale measuring patient satisfaction,
TSS-2. Results from the six-item questionnaire are shown in figure 3. Overall, the results
showed an over 90 % patient satisfaction to a great or fair extent on all six question items. On
the questions concerning agreement on treatment goals and satisfaction with received
treatment, slightly lower levels of satisfaction were declared. When treatment satisfaction was
compared between the ED diagnose groups, no statistically significant differences were
found.
10
Figure 3. Patient satisfaction at the one-year follow-up according to TSS-2.
The additional aim of this study was to evaluate if baseline characteristics such as psychiatric
comorbidity, symptom severity and type of ED diagnosis affected treatment outcome. At the
one-year follow-up, 103 patients had a registered follow-up value for EDE-Q and for those
patients, CS/RCI were calculated. Table 4 shows treatment outcome, according to CS/RCI for
EDE-Q, as a comparison between patients with and without comorbidity at the initial
evaluation. Of the patients with initial comorbidity, 43.3 % were recovered at the one-year
follow-up, compared to 62.8 % of the patients with no initial comorbidity. Statistical analysis
(two-sided Fisher's exact test) confirmed a statistically significant difference in the treatment
outcome between patients with and without psychiatric comorbidity at the initial evaluation (p
= 0.021). No significant associations were found for neither symptom severity according to
PSR and treatment outcome, nor type of ED diagnosis and treatment outcome.
0% 20% 40% 60% 80% 100%
I was treated respectfully
Satisfaction with received treatment
Satisfaction with caregiver's ability to listen
and understand
Trust in caregiver
Agreement regarding treatment goals
Satisfaction with treatment unit as a whole
Treatment satisfaction scale 2
To a great extent
To a fair extent
To some extent
Not at all
11
Table 4. Treatment outcome according to CS/RCI for EDE-Q. Total sample and comparison
between patients with and without comorbidity at the initial evaluation.
DISCUSSION
The primary aims of this study were to describe clinical characteristics of the studied patient
group as well as to evaluate treatment outcome and patient satisfaction at the one-year follow-
up.
As expected and in line with other studies [9,10], the most common diagnosis in our patient
material was EDNOS, followed by BN, AN and BED. When we compared our results to the
annual reports from Riksät [37–41] covering ED units from all over Sweden, we found that
the patients in our study to a lower degree had been diagnosed with the more specific
diagnoses AN or BN and to a higher degree with EDNOS compared to Sweden as a whole.
The reasons for this are hard to speculate in but one potential factor could be that the patients
may come to Eriksbergsgården earlier in the course of disease, before they potentially meet
all criteria for the more specific diagnoses.
Almost two thirds of the patients in our study, 62.0 %, suffered from axis I psychiatric
comorbidity. Even though this number is high, the prevalence found in our study was slightly
lower than what was found in a large nationwide Swedish study conducted between 2005 and
2014 [9]. The study in question also used data from Stepwise and found comorbidity in 71.2
% of the cases. One factor that may contribute to the lower number found in our study could
be that Örebro has a low proportion of patients treated in inpatient settings. Higher
proportions of comorbidity have been found among inpatients than outpatients [42]. Another
possibility is if a lower proportion of the patients in our material, compared to the national
average, were asked about all types of psychiatric comorbidity. If so, this could lead to an
underestimation of comorbidity in our study.
12
Regarding the diagnostic fluxes between the initial evaluation and the one-year follow-up a
couple of things stood out. First, the high proportion of BED patients no longer having a
diagnosable ED at the follow-up. This can probably, at least in part, be attributed to the fact
that out of the BED patients in our study, only ten had a registered follow-up diagnosis. As a
result, a single patient can considerably change the proportions in our study. Second, no
diagnostic crossover occurred between the AN and BN patient groups and vice versa. This
was surprising since crossovers between AN and BN diagnoses are a common finding in
studies [43–45]. One factor contributing to this may be the limited follow-up time in our study
compared to other studies [44,46]. Possibly, diagnostic shifts between the AN and BN
diagnose groups may take a longer time to appear, partly because of the rather strict BN and
AN diagnostic criteria of DSM-IV [8], Had the follow-up time in our study been longer,
maybe a different pattern would have emerged.
The results from the TSS-2 at the one-year follow-up showed overall high rates of patient
satisfaction with Eriksbergsgården’s treatment unit. When our results were compared with
data from Riksät’s annual reports, Eriksbergsgården was above the national average on all
question items [37–41]. Slightly lower proportions of satisfaction to a great or fair extent were
found on the questions regarding agreement on treatment goals and satisfaction with received
treatment. Even though patient satisfaction is still high in these areas, this may be of
importance to work on since compliance to treatment is more likely if patients feel involved
in their treatment plan [47].
Loss to follow-up in our study was substantial. Even though there were no statistically
significant differences between the patients with and without a one-year follow-up, the trend
pointed towards higher proportions of psychiatric comorbidity in the patient group without a
follow-up. This may suggest that patients without a follow-up were more severely comorbidly
ill and maybe, as a consequence, less susceptible to treatment. In addition, suicidal ideation
were more than three times more common among the patients without a follow up. This
shows on a need to address any suicidal ideation as a part of the treatment. The reasons for the
substantial loss to follow-up could be a combination of many different factors, e.g. follow-ups
are time-demanding, or some patients decline to participate after terminated treatment. The
fact that so few patients had a registered one-year follow-up is worrisome since follow-ups
provide important information to both the caregiver and the patient about the treatment
process. They are also a crucial part of healthcare quality work. The findings in this study
showed that Eriksbergsgården during the time period had a lower proportion of follow-ups
13
compared to Sweden as a whole [37–41], this is an area where a lot can be won from
improvement.
An additional aim of this study was to examine if factors such as psychiatric comorbidity
affected treatment outcome. Statistical analysis confirmed a significant difference in treatment
outcome between patients with and without comorbidity at the initial evaluation. Our results
show that psychiatric comorbidity may have a negative effect on treatment outcome,
something that has also been the findings of other studies [6,17]. This demonstrates on the
need for future large-scale studies that further investigate the connection between psychiatric
comorbidity and inferior treatment outcome. Another possible topic for future studies is to
investigate if ED can be treated more successfully by first treating any psychiatric
comorbidity.
LIMITATIONS
Our study has some limitations. First, only the initial and the one-year follow-up patient
observations were included, thereby restricting our knowledge about the patients and
treatment outcome to these two points in time. Also, the substantial loss to follow-up reduced
the possibilities to draw conclusions from our study material. Second, patient assessment may
have differed between assessors, even though the risk was reduced by the use of the
standardized computer-based Stepwise and Riksät systems. Third, limitations with register
studies include that the study material is restricted to the data stored in the registers. For
example, we have no information on the number of patients receiving simultaneous treatment
for their comorbidity. Furthermore, Stepwise and Riksät are treatment and not diagnose
registers. Since a considerable proportion of ED patients never seeks treatment [14], it is
important to be cautious about extrapolating our results to ED patients as a diagnose group.
Fourth, our study is small and includes just one eating disorder treatment unit. This makes it
hard to conclude if any findings in our study are generalizable or may be due to local factors,
for example if the patient group substantially differs between Eriksbergsgården and other
treatment units.
CONCLUSIONS
Our study confirms the previously known fact that psychiatric comorbidity among ED
patients is common. Also, the results indicate that psychiatric comorbidity may have a
14
negative effect on treatment outcome. The later shows the need for large-scale studies that
further investigates the connection between psychiatric comorbidity and inferior treatment
outcome. This could in the future lead to new treatment approaches for ED patients with
psychiatric comorbidity.
15
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APPENDIX 1
DSM-IV EATING DISORDERS
Anorexia nervosa (AN)
• Restricting type
• Binge eating/purging type
Bulimia nervosa (BN)
• Purging type
• Nonpurging type
Eating disorder not otherwise specified (EDNOS)
• EDNOS 1: meets all other criteria for AN but has regular menstruations
• EDNOS 2: meets all other criteria for AN but weight is currently within the normal
range, despite significant weight loss
• EDNOS 3: meets all criteria for BN except that binge eating and compensatory
behavior occur at a frequency of less than twice a week or the duration of the
condition has been less than 3 months
• EDNOS 4: regular use of compensatory behavior without binging
• EDNOS 5: chewing and spitting out food
• EDNOS 6: binge-eating disorder
Adapted from Diagnostic and Statistical Manual of Mental Disorders, fourth edition [8].
DSM-5 EATING AND FEEDING DISORDERS
Anorexia nervosa
• Restricting type
• Binge eating/purging type
Bulimia nervosa
Binge-eating disorder (BED)
Other specified feeding or eating disorder